September 10, 2019 at 8:19 am #464829
I am feeling a little lost. I’ve been on my AP Journey for about 10 months now. I have mycoplasma, bartonella, analplasma,and psoriatic arthritis. I have definitely been exposed to Lyme and have DNA bands in my blood work. I started with 200 mg of doxy twice daily and 500 mg flagyl every other day. It worked marvelously at first, but eventually seemed to stop. Doc changed the doxy to clarithromycin 500 mg twice a day and kept the flagyl. It’s not working. I am not getting any better. My joints are in pretty bad shape. Just getting out of bed can be a real challenge.
Any advice on next steps, including changes in meds to recommend? I might try to find a doc who does both AP and Lyme co-infections. Current doc is very limited in Lyme co-infection understanding, but is somewhat open to my suggestions. Any personal experience with an AP and Lyme literate doc would be helpful.
Thank you!September 10, 2019 at 10:12 am #464837Lynne G.SDParticipant
Oh,do I ever know this story.If you live in Canada you can get a lot of help from the Canlyme site.I know there are several in the U.S but can’t remember then,Lynenet kind of rings a bell.Do a little Googling on cronic Lyme as that could bring up the best info as cronic is much more severe.September 10, 2019 at 10:49 am #464839
How long have you been on clarithromycin? Ten months in is still relatively early days and even the smallest tweak in protocol can affect some rheumatics and drive new rounds of herxing. Have you considered switching from doxycycline to minocycline? LDN also seems to help some folks with PsA.
Are you doing anything to detox and have you eliminated starches, simple sugars, gluten and/or dairy from your diet? Probiotics?
Can you let us know where you’re located? There are some pretty good LLMDs scattered about the US but it would help to know where you are.September 10, 2019 at 6:48 pm #464840
Thanks all for your replies.
I’m in Texas and see Dr. K. I am open to traveling out of state to see an LLMD as I think my case is rather challenging. I have been on clarithromycin for 3 months or so. I guess doxy just initially helped me so much, I thought switching from it to clarithromycin would have caused a change before now. Yes, I have thought about asking to switch to minocycline.
I am doing a few things for detox (milk thistle and GI Detox a few times a week). Any other recommended detox supplements? Daily probiotics. No gluten (Celiac gene), only a few sources of dairy that I tolerate, limited sugar, and very few grains.
I appreciate all recommendations.September 10, 2019 at 8:17 pm #464841Lynne G.SDParticipant
Best detox for me was the lemon/olive oil drink.Throw a cut up lemon into the blender with an ounce of oilve oil,fill with water and blend the living daylights out of it.Strain and keep in the fridge.I drank roughly 1 small glass a day.Just sipped it throughout the day.Funny thing is that you never realize there is oil in it.I love lemons so it was no hardship for me.Today I use green cannabis juice as it is even better.I grow 2 plants for this,Chop it up in a food processer and throw it in a big jug full of water.Let it sit in the fridge for a day before straining into an other jug.When pot is green it is not psychoactive,has around 400 flavanoids,terpenes and the THC is THC-A.IT only becomes psychoactive if heated so don’t let it sit in the sun.September 11, 2019 at 11:41 am #464846
Sounds like the protocol you’re on is fine, except experienced LLMDs often add to the Protocol rather than subtract. E.g., in the early days I took tetracycline, clarithromycin, and plaquenil. LLMDs like to switch abx frequently, so multiple combinations, such as Moxatag and Diflucan, Penicillin IM and diflucan, Mepron and Azithromycin, tetra/clarithromycin plus tinidazole (or flagyl), minocycline and Azithromycin, etc. The goal is to target all forms of Lyme and various tickborne (or reactivated) coinfections, keeping the bugs running while preventing abx resistance issues. It’s harder for pleomorphic organisms to shape-shift to escape the antimicrobial mix when the protocol targets cell-walled forms, cell-wall deficient forms, and dormant cystic forms.
There is a very experienced LLMD in TX (Dr. W.), affiliated with ILADs, who has had great patient feedback – do you have his contact info?
In the case of PsA (psoriatic arthritis), this rheumatic patient subset has found it beneficial to eliminate starches and nightshade foods. Have you tried this approach? My MIL had PSA plus AS and quickly learned that if she ate potato, peppers or tomatoes, her fingers swelled up into sausage-like balloons within hours. It might not help every case (like anything you read here, each person is unique in response to meds and diets, detoxing, etc). There is an informative website, http://www.kickas.org and you might also like to view the CPN website that exemplifies combination antibiotic protocols protocols at http://www.cpnhelp.org
In regards to detoxing, it’s best to work with an integrative type doc who understands the needs of autoimmune patients. Even when detoxing, reactions can occur, and some supps may contain starch fillers, for example, that may inadvertently make the situation worse.September 11, 2019 at 4:59 pm #464850
Thank you so much for your replies. I really think I need a combo like you are describing Maz. Thank you for the info about nightshades and other foods. I have done extensive work on diet and pinpointed exactly what aggravates my system. I definitely have to avoid nearly all the nightshades and most starches.
Unfortunately, Dr. W has retired. I have heard wonderful things about him.
Maz, do you recommend a different doctor either in state or out?September 11, 2019 at 8:42 pm #464851
Thanks for that feedback, pmself. Sorry to hear Dr. W. retired as he would have been a very good option. I will send you the “most experienced” LLMD list in a private message.
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