HPYLORI treatment ending

[sandy]

Hi, my 10 day treatment for HPYLORI will end this Sunday and now we get to treat the LYME soon, so I called Dr. F. and I am to just go back to MIno & clindy…my PCP did give me a lyme specialist person in this city and I'm wondering if this mino and clindy sound okay to the LYME PEOPLE…I just have to check and cross check, even with the best of advice from DR. F…I want to make sure I know what to ask & make sure this is enough.

One odd thing: the PCP will not re-test for HYPYLORI until 6 mos. minimum (he just said he never does)…so I clinically will not know if the HP is gone for a while. As mentioned, the knee burning and tight muscles and sore joints are keeping me awake and I did ask Dr. F's office for anything to help me sleep or help with the pain…..(I'll hear back I'm sure). I liked Maz's idea of ultra sound as I put in “burning knees” to see if I had any more answers, but MY OWN SUBJ. burning knees did not come up…Cheryl…how do I get to see ALL posts…My page just shows the first 8 or so…with no page turner..need help to navigate.

[Maz]

[user=163]sandy[/user] wrote:

Hi, my 10 day treatment for HPYLORI will end this Sunday and now we get to treat the LYME soon, so I called Dr. F. and I am to just go back to MIno & clindy…my PCP did give me a lyme specialist person in this city and I'm wondering if this mino and clindy sound okay to the LYME PEOPLE…I just have to check and cross check, even with the best of advice from DR. F…I want to make sure I know what to ask & make sure this is enough.

One odd thing: the PCP will not re-test for HYPYLORI until 6 mos. minimum (he just said he never does)…so I clinically will not know if the HP is gone for a while. As mentioned, the knee burning and tight muscles and sore joints are keeping me awake and I did ask Dr. F's office for anything to help me sleep or help with the pain…..(I'll hear back I'm sure). I liked Maz's idea of ultra sound

 

Hi Sandy,

I've only got my own experience to go by and the information my doctor shares, so please don't take this as gospel…every situation is unique and each doctor is unique.

With that personal 'disclaimer', however, 'in general', most LLMDs like to change up their protocols on a regular basis to (a) make sure they are covering all the corners on possible coinfections and (b) to keep keep the bugs running. Not all LLMDs are cut from the same cloth, however. Some prefer more naturopathic methods (natural methods using supplements, diet, massage, etc), some are holistic (whole being balance), some integrative (combining allopathic and alternative methods) and some are stictly allopathic (mainstream medicine). So, it's a very good idea to check in advance of visiting any Lyme or AP doc to confirm what their treatment philosophies involve and to ensure you are comfortable with their approach. 

You asked above, if mino and clindy were Lyme treatments. Mino is a Lyme treatment, being in the tetracycline family along with doxy and tetracycline. It's a third generation tetracycline with greater anti-inflammatory properties. Some LLMDs don't like using mino due to possible increased risk of side-effects (nausea, hyperpigmentation, vertigo, etc), as they are so used to treating Lyme at much higher doses than the lower doses used in AP. So, if you want to continue on mino, it's something you could suggest at the lower AP doses in addition to any other combos an LLMD might suggest. Rheumatoid patients tend to be pretty hypersensitive, so you may find that the higher doses, as I found, can sometimes cause pretty intolerable herxing.

I've asked my LLMD about clindy IVs and he's reluctant due to the risk of intestinal complications (namely, c-difficile infection). He said if IVs are to be used, it's preferable to use IV ceftriaxone or IV rocephin. As a rule, he prefers oral abx over IVs, because in his previous experience there is also the risk of infection in the portacaths many Lyme patients have inserted into their chests while undergoing months and months of treatment. It's worth bearing in mind that Lyme treatments, including IVs, tend to be quite different in terms of dosing, though, and worth investigating further with your new LLMD before making any decisions. IV clindy is, on the other hand, a very good treatment in the short courses used, as per Dr Brown's protocol, for jumpstarting progress in rheumatoid disease.

The other thing of which to be aware is that most “infectious disease” doctors consider themselves to be Lyme specialists. However, they aren't cut from the same cloth as LLMDs, either, as a general rule. Infectious Disease specialists tend to follow the CDC guidelines for Lyme treatment (short courses of abx), which are severely restrictive and don't acknowledge chronic Lyme, at all. Although your PCP may be very well intentioned, it might save you angst and time just to check he's sending you to an LLMD (Lyme Literate MD) and not your average infectious disease doc.

With respect to your concerns about lingering H Pylori infection, some of the Lyme combos used should help cover that corner for you. As mentioned before, clarithromycin (brand Biaxin) and azithromycin are commonly used to treat Lyme and are also H Pylori treatments. It's worth mentioning to the Lyme doc you see that you've had this infection and would like to try a long course of Biaxin or Zith. Zith can sometimes be tricky to get covered by your insurance carrier, though…it's expensive.

In any case, sticking with mino and clindy until you see the new LLMD should be fine. He/she may suggest a new course of treatment for a time, but that's not unusual, because Lyme has so many forms – cyst, speroblast, L-Form, spirochete – and different treatments are used to target these different life stages, some of which are more resistant.

Ultrasound continues to help my knees and ankles a lot! My pain levels are decreasing on a week-by-week basis – I'm having 20 sessions over ten weeks. It's a common therapy used by physical therapists to reduce joint swelling and scarring in the joint capsule. My LLMD told me that the vibrations also give the bugs a run for their money. I was kind of bemused by this until I came across an article in Science News that outlined a new therapy they are having great success with (I posted this article on the old BB), using lazers to zap and break up the outer, resistant shells of viruses. They likened lazer therapy to ultrasound therapy in the article, saying it was based on a similar premise of using vibration at various frequencies to kill pathogens.

One thing that helped with knee burning was to apply electric heating pads to my knees for ten mins or so, off and on, throughout the day. You can buy these very reasonably at any chain pharmacy.  My PT also just suggested I start alternating heat with ice, two or three times a day with ice packs for ten minutes to help reduce swelling. You might also find hot pool therapy to be helpful…the trick is finding one!

That's about all that comes to mind for now, Sandy.

Peace, Maz

[sandy]

Thanks for your long and generous explanation of all things lyme…I admire the energy you have for finding articles and being able to speak about the different approaches…not sure if I was clear in my post…but Dr. F. said HE would be the one treating me for Lyme when he called and as soon as my 10 days for HPYLORI ended (which is Sunday), he said I would go back on the initital clindy/mino he recommended in Feb. and that I started for a few wks until the HPYLORI came and I had to stop. …I will be using the same mino dosage of 100 MWF, so only the clindy is new. It's interesting that mino ALONE was not able to treat the lyme and I suspect it's what you indicate about the different forms and types…So I could go with Dr. F's treatment for lyme but it's interesting when I called the lab in No. Calif. I found out that there is even a seccondary test…one you could take to identify more accurately the meds you should take..ever hear of that? This same lab said there was a Dr. R. in seattle who knows their lab and I had actually gone to him as someone on this list found him for me (thanks again…wish my memory was better)…so if it were you would you continue with Dr' F.'s treatment…I think I'm leaning that way as my energy is limited right now…and then maybe I could go to Dr. R. as a back up if I'm not getting better….I tend to get anxious and fearful as I am aware I don't know a lot…but I also want to focus and keep going with something for a while until I know it's working or not…so I guess I answered my question…thanks for feedback on knees, ultrasound, hot and cold……this ultrasound search will be big…as I'll need a referral and I'll have to go back to the PCP for that…the old Rheumy here will be offended that I've gone to a specialist. Thanks for your generous help. I feel survival depends on gleaning information here on this list….and parsing it all together takes energy…THANKS

[Maz]

[user=163]sandy[/user] wrote:

It's interesting that mino ALONE was not able to treat the lyme and I suspect it's what you indicate about the different forms and types…So I could go with Dr. F's treatment for lyme but it's interesting when I called the lab in No. Calif. I found out that there is even a seccondary test…one you could take to identify more accurately the meds you should take..ever hear of that? This same lab said there was a Dr. R. in seattle who knows their lab and I had actually gone to him as someone on this list found him for me (thanks again…wish my memory was better)…so if it were you would you continue with Dr' F.'s treatment…I think I'm leaning that way as my energy is limited right now…and then maybe I could go to Dr. R. as a back up if I'm not getting better….I tend to get anxious and fearful as I am aware I don't know a lot…but I also want to focus and keep going with something for a while until I know it's working or not…

 

Hi Sandy,

No worries…  So many chronic Lyme patients have discovered that infectious disease docs don't normally acknowledge or treat chronic Lyme in quite the same way as an LLMD and have discovered this the hard way. I was really fortunate when another Lymie mentioned this difference to me on a Lyme support board when I first got sick, so just thought it might help to pass this along to you. 😉

Just to give you an idea of the many Lyme combos I've been on this past year:

First protocol: Tetracycline and biaxin with plaquenil (a Lyme cyst buster) for 4 1/2 months.

Second protocol: Dropped plaquenil due to visual disturbances, but added bicillin IM shots once a week to tetracycline and biaxin for two months.

Third protocol: Dropped tetracycline and biaxin. Continued  Bicillin IM shots and tried Shardt Protocol (Diflucan) for one month.

Fourth protocol: Over course of 3 months, I did two-week long pulses with one week washout breaks, alternating diflucan with tetracycline and biaxin. Continued bicillin IM shots.

Fifth protocol: Dropped Bicillin IM shots after 6 months and also dropped biaxin, tetracycline and diflucan pulses. Started low dose minocin and rifampin for 2 months.

Sixth protocol: Dropped rifampin and remained on minocin, adding azithromycin (as per my signature line below).

By sharing this, I don't mean to concern you. My LLMD just happens to be into changing up the protocol, especially when my progress slows. He's often mentioned to me that I was the most severe case of reactive Lyme arthritis he'd ever encountered, so I think he's just trying to cover all the bases.

Dr F is one of the best AP doctors around, so you're really fortunate to be in his knowledgable hands. As you say, you also have the name of a good Lyme doc, if you should need him, later down the road. Anxiety doesn't help our conditions or confusing things by visiting different doctors with conflicting protocols. So, your decision to stick with Dr F for a while and see how you go sounds like a plan.  In your shoes, I think I'd do the same thing.

The only Lyme Lab I know of in CA is IGeneX. Is this the one you mean? If so, you could always call them and ask about the tests that help specify the meds you need. I haven't heard of these partcular tests, so can't help much with this.

http://www.igenex.com

Fingers and toes crossed you're well on your way to full health again, Sandy, especially as you are in Dr F's capable hands! Let us know how it's going for you from time to time, if you can. Would love to know how you're progressing.

Peace, Maz

 

[sandy]

Hi Maz, that's very useful to know the length and various types of meds used esp. since my hpylori stint will only be 10 days & I may have to be prepared for a longer run with lyme….I have seen no dramatic improvement yet w/ the HP tho I have 4 days left….hopefully the Antibiotics are working…exactly right about anxiety…I h ave to keep reminding myself and not being able to walk w/o stiffness keeps me away from a real important stress reliever….

Did you notice benefits consistently, eventho you were changing meds? You mentioned you once walked like a crab somewhere…that's the way I am in the AM..knees bent & I take the now 15 mg of prednisone around 3:30 Am as it takes 5 hrs. to kick in (for me at least) Thanks, I'll keep going here….

[sandy]

Igenix IS the lab in CALIF…and this is the lab who gave the name of the LLMD doc in seattle, so there is a back up…the lab mentioned the other test so I can let DR. F. know about that, if he doesn't know….it helps define what meds would work with various types of lyme………so that's one tip I can pass to YOU….I hope to be in a positon to help one day…as now I”m SO NEEDY!

[Author]

Posts