New, more troublesome symptoms after almost 4 years on AP

[Fran]

For about the past 2 weeks I feel I'm getting progressively worse really fast.  I have been on doxy 50 mg MWF but this week I only took it on Wednesday and can't bring myself to take it today.  It seems that the two days following my doxy day I am having really increased joint pain thats making it hard to walk.  Its more so in my hips/knees and shoulders.  I can't think this could possibly be a herx after being on this same doxy dose for almost a year. 

The only thing I've added different has been LDN 6 weeks ago.  I started out the first 3 weeks at 1.5 mg and 3 weeks ago I ramped it up to 3.0 mg.  Tonight I'm supposed to move up to 4.5 mg.

My questions are: 

1) Can I be developing a sensitivity to doxy like I did with mino?  I don't feel as horrible as I did on the mino, but it is definitely getting worse.

2) Has anyone added LDN to their regime and had this kind of reaction?  I don't feel like I'm having a candida issue.  I use grapefruit seed extract, oil of oregano and really good combo of probiotics.

3) Is being off the doxy like this going to set me back even further than I'm already falling?

I really feel like I'm running out of antibiotics to try and its been almost 4 years here!

Any advice? 

[lynnie_sydney]

Fran – any change of regime is likely to elicit a herx. And you have just added LDN. Maybe you need to put a call through to your doc's office to discuss your symptoms and whether you might need to move back down with your LDN dose, at least for a while. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Maz]

Fran, in addition to Lynnie's suggestions, I'd suggest PMing [user=324]jfr[/user]. I believe, if memory serves, she suffered a mighty herx exactly 6 weeks into using LDN and perhaps she can share what she did at the time to reduce its effects.

LDN upregulates immune function, so some form of herxing is inevitable where inflammation exists. Also, with LDN, there are two factors that may worsen such a situation – untreated candida and Lyme disease.

Hope [user=324]jfr[/user] can offer some helpful insights for you…she was lovely when I began LDN and offered some great tips.

So sorry you're having such a rough time. Did you get any further with the Lyme question?

Peace, Maz

[APbeliever]

You might reduce the LDN dose as 4.5 mgs of LDN gives a real bad herx to some of us. I am currently on 2.5 mgs of LDN and it works better than 4.5 mgs for me. If you cannot get your doctor to reduce your LDN dosage (I found it impossible for my doctor to reduce the dosage) then take out the powder from LDN cap and drop half the powder in your lemon olive drink that one should take at nighttime for liver cleansing anyways.

[richie]

Hi–Its all over the internet how grapefruit juice and many antibiotics really dont mix –Is it possible the seed extract is the same ???perhaps this is why you have been have so many problems taking mino and now doxy —

richie

[Fran]

Richie- I never took grapefruit seed extract while on mino and the reaction I had to mino was entirely unrelated.  I developed DIL on mino.  I took grapefruit seed extract for 30 days prior to starting LDN per my doctor's instructions but haven't had it for over 3 months now.

Maz-  I did contact JFR and she's been helpful.  I also found a LLMD that someone on the board here recommended that I'm going to go see.  Since the LDN has given me so many increased problems, I've heard that if there is a lyme issue you can get worse on LDN. 

APbeliever-  I decided last night not to go up to the 4.5 dose but even the 3.0 dose is giving me problems so I might drop back down to the 1.5 dose until I get things sorted out.

I just hope that this isn't a worsening of this disease rather than a herx or something but its so frustrating cuz its so hard to tell what's going on.  Thanks!

[BrendaCalif]

Fran,

  I read somewhere that LDN blocks endorphin and opiod receptors.  Could it be that in your case the blocking of the happy brain chemicals is creating a problem?  Maybe you can lower your dose to be sure.

Note: I may be out of touch, I haven't posted on the web site for several years.

BrendaCalif:)

[Cheryl F]

[user=2499]BrendaCalif[/user] wrote:

 I may be out of touch, I haven't posted on the web site for several years.

BrendaCalif:)

Brenda,

Welcome back.  If you are an RBF old timer, you will see alot of new faces here, but there are several that you will likely remember, Richie, A Friend, Lynne_G, and Lynnie_Sydney are all 5 plus year members of the RBF Bulletin Board.

We are glad you are back, the new comers are always asking where the long time APers go and why they are regulars on the BBoard. Our only answer is that usually they have their lives back and they move on to healthy pursuits.

Again, welcome back!

Cheryl Ferguson

[randyremote]

The other thing is, if you really have Lyme, the dose of doxy you are taking is much too small to help it, according to standard treatments like the Burrascano protocols, where you might be taking 100 3x/day, for example.
That's the maddening thing, isn't it? How do you know if you are herxing, or just getting worse?
I'm curious, did you test positive for RA?

[lynnie_sydney]

[user=2499]BrendaCalif[/user] wrote:

Fran,

  I read somewhere that LDN blocks endorphin and opiod receptors.  Could it be that in your case the blocking of the happy brain chemicals is creating a problem?  Maybe you can lower your dose to be sure.

Note: I may be out of touch, I haven't posted on the web site for several years.

BrendaCalif:)

Brenda, I dont believe this is the problem as it is only a tiny fraction of time that this takes place – and in fact I understand that this encourages the body to produce endorphins. There is a greater explanation of this on their website http://www.lowdosenaltrexone.org. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Maz]

[user=123]Fran[/user] wrote:

Maz-  I did contact JFR and she's been helpful.  I also found a LLMD that someone on the board here recommended that I'm going to go see.  Since the LDN has given me so many increased problems, I've heard that if there is a lyme issue you can get worse on LDN. 

Fran, so glad you managed to get through to JRF…she's such a nice lass. Yup, Lymies need to go really slow with the LDN and increase in tiny increments. Also so glad you've found an LLMD to go see in your home state and do hope he will be able to work with you to find the right abx combo. The great thing about experienced LLMDs is that they're a bit like bloodhounds and know their infections and abx well….and will use them to get us well. It may take time – they say it can take as long to turn chronic Lyme around as one has had it – but finding the right mix can also be a real miracle.

Please stay in touch, Fran, and let us know how you get on at your appt. I saw Kim had already very kindly given you info on the IGeneX lab testing, so fingers crossed on all that for you.

Peace, Maz

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